​OUR MISSION

Founded by mothers for other mothers, our mission is to ensure that all women in the United States are treated equally by receiving the most accurate, non-invasive prenatal genetic screening information available about the health of their baby – NO MATTER WHAT. We are driven to remove limitations related to insurance coverage, and income or age discrimination that prevent many pregnant women from being offered the most accurate prenatal screening information available.

We are committed to ensuring that all pregnant women have access to the most accurate information available via less risky, invasive methods about their pregnancy AS EARLY AS POSSIBLE. The goal is to help moms avoid unneeded stress, possibly prevent unnecessary invasive procedures from a false positive result, and allow a mother to receive crucial information early in their pregnancy about their baby’s genetic condition.

Non-invasive prenatal screening tests (NIPS or NIPT) are often the most accurate screening test available, but they are often not covered by insurance companies like Aetna or UnitedHeathcare and through Medicaid in 13 states (Alabama, Arizona, District of Columbia, Indiana, Louisiana, Maine, Missouri, Nebraska, Nevada, New Mexico, Pennsylvania, and Rhode Island).

As a result, approximately 62% of all pregnant women are offered older tests, from the 1960s, such as serum or quad screenings which deliver a higher rate of inaccurate results – 65 out of 1,000 women will receive an incorrect result compared to less than 2 in 1,000 women using NIPT which has been available since 2011 – THESE TESTS AREN’T THE FUTURE, THEY ARE NOW.

These inaccurate results can provoke needless anguish and worry – possibly even an unnecessary invasive CVS (Chorionic Villus Sampling) in the 1st trimester or amniocentesis in the 2nd trimester, which can cause miscarriage. For others, including the up to 13,000 women per year who receive false negative results, dealing with the shock of not knowing about their child’s genetic condition until late in pregnancy or after delivery is the struggle they have to go through. Knowing sooner gives these women the opportunity to acclimate to the news and act earlier to address their baby's genetic condition.

DON'T SUFFER IN SILENCE

The undue stress and anguish from a false positive result is no minor thing, it can lead to unimaginable anxiety, pain from needless invasive diagnostic procedure, and in the worst case – a catastrophic miscarriage after the diagnostic procedure. Let your story be heard to show moms everywhere that that they are not alone in the stand for truth.

SAY NO TO NOT KNOWING

Your personal story has the power to prevent false negative results - and keep the birth day the happiest day of a mom's life. By participating, you can help ensure that all pregnant women are offered the most accurate prenatal screening information as early as possible, to prepare for any genetic condition.

STORIES

Let your shared experience become a beacon of hope, shedding light on the challenges that could be alleviated through the most modern, effective noninvasive prenatal screening test. By sharing your story you can be part of a movement that changes insurance coverage policy for other women. Your story has the power to make a difference.

These mothers have shared their stories – we hope you will too.

MY STORY: KATIE

I cried for three weeks waiting for an answer.

I was offered the older maternal screening test. I will never forget getting the call from the genetic counselor telling me, “I don't want you to panic but your Down syndrome screening came back high risk”. I asked what are the chances? She told me it was 1 in 250. I went blank and started to cry.

I continued crying for three weeks and I know it was three weeks because that is how long it took to get the results - the longest 3 weeks of my life. It took about 1 week had to meet with a genetic counselor in person, and then I was offered either an amnio or a newer test called non-invasive prenatal screening (NIPS). She said it wasn’t covered by my insurance and that it might cost me up to $800 out of pocket. I took the NIPS test anyways, and waited less than two weeks for the result to come back normal.

For those three weeks after the first test, I wasn't excited about my pregnancy anymore. I was scared, unsure of where this would lead me. I was in my second trimester, and people were asking me daily how I was doing. It made things even worse. This experience changed my entire pregnancy. When I had my 20-week ultrasound later in my pregnancy I was terrified and anxious. No pregnant woman should go through what I did. Why didn’t they tell me that the older test was very often wrong and not to worry? Why did they even offer me the older test when a better more accurate test was available?

MY STORY: SUZANNE

I wish I had known sooner!

At 20 years old I was pregnant with my daughter Annie and after an initial quad screening in my first trimester everything looked healthy and normal, I couldn’t have been more excited. But, then in my 24-week check-up the doctor noticed that Annie was looking too small and after confirmatory testing I found out she had Trisomy 18 (Edwards Syndrome), a very serious genetic condition, and would likely die from complications associated with the disorder before or soon after birth.

My biggest challenge was finding the right clinical team who would support my decision to keep my baby in utero as long as possible so I could say good-bye to her. I knew she would likely die at birth, but I wanted more than anything to hold her and say good-bye once and for all. Because of the surprise of Annie’s diagnosis, I didn’t have the time to carefully research my options or pull together the most appropriate clinical team who would support my decision to go full-term. Instead, I spent the last 8 weeks of Annie’s life fighting my doctor’s recommendation to have an abortion. I championed for my daughter and was able to hold her at the end.

With all my heart, I wish I could have spent Annie’s last weeks’ preparing for the end of her life versus fighting with my doctors to keep her alive. When I got pregnant the second time, I was told that as a Medicaid patient I couldn’t have the newer, more accurate test. I fought them and ultimately received the newer non-invasive prenatal screening test. I delivered a healthy son and have requested non-invasive prenatal screening for all my other babies.

HOW YOU CAN HELP

Over 3.7 million pregnant women in the United States are denied insurance coverage for a newer and more accurate prenatal genetic test despite the evidence and statistics that it is better. Stand up for more accurate prenatal answers by sharing your story. Let’s show the insurance companies and states where Medicaid doesn’t cover the screening test that our stories do matter. Share your story and be part of a movement to ensure that all pregnant women have insurance coverage for the most accurate and newest prenatal screening test.

This program is intended for residents of the U.S. only. Our mission is focused on improving insurance and Medicaid policies for women in the U.S. only.

SIGN OUR PETITION

Unite with other concerned citizens and take action to ensure all pregnant women receive the best healthcare services.

Every day, many younger women in the United States receive inferior prenatal genetic testing at the most critical time in their pregnancy because United and Aetna Healthcare Insurance do not cover non-invasive prenatal testing for pregnant women under 35 years of age. Here are the facts:

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80% of babies born with Down syndrome, the most common genetic condition, are born to women under the age of 35!

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Research shows that women denied this test receive wrong information 30x more often!

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Each day, it is estimated that 450 women will receive a false positive result. Over half will undergo an unnecessary, risky, invasive diagnostic procedure, and one will miscarry as a result. Even worse, parents and doctors aren’t prepared for an affected baby, which can negatively impact the baby’s medical prognosis and parents emotional preparedness. Each day, 35 babies will be unexpectedly diagnosed with a genetic condition.

Take action today. By signing this petition, you will let Aetna and United Healthcare know that this issue matters to people like yourself who care about women’s health.

Consent: By providing my contact information, I give my consent for Stand Up for Accurate Prenatal Answers to contact me. At any time, I can decline my consent by sending in writing my desire to no longer be part of the program. Unsubscribe@standup4apa.org

Confidentiality: I understand that I may be sharing medical information in my personal story and I consent to have it being used anonymously. I give Stand Up For Accurate Prenatal Answers permission to have access to the private personal information that I share.

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Privacy Practices: We understand the importance of privacy and are committed to maintaining the confidentiality of your personal information including medical information you share. We will not publish your story or name without your permission. We are required by law to maintain the privacy of protected health information and to notify affected individuals following a breach of secured protected health information. See the Privacy Policy for more details.

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